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Just a Reminder…

I needed this reminder yesterday… And thought some of you might too. ♥

Just a reminder /autoimmune disease/flare up/herx/

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Some days it’s just hard to hide the fact that I am devastated by this illness. I think one of the worst parts is that you can have several bad days in a row, and handle it just fine. Then one day you lose it because you’ve gone so long just handling it that you eventually get to a point where you just can’t do it anymore.

But after a day of grief, you pick yourself up again and start anew. Tomorrow is a new day. ♥

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Why I Blog

I always wanted to blog. I can remember starting to talk about it back in 2008. But I never had the guts. “What if people think I’m stupid”? was one of the things that came to my mind a lot. The other reason I was scared, was because of time… (yes it is time-consuming) But I was scared that I might not have felt up to it after treatment or a random flare up. But I’m so glad I started this blog.

I have always wanted to journal my life. I have at least 5 empty journals in my study right now to prove my good intentions. I just don’t want to forget all the good stuff, and I want to remember all the bad stuff too, to be honest. I want to read back in a year’s time and see that I overcome certain things that tried to knock me over.  I want to remember it all…to reflect on it, to share it, to keep it close to me. And I want to remember all the travels, laughs, good food and concerts too. All the things that make my heart beat faster.

Why I blog

When I played around with the thought of blogging some more, I thought that I will blog about all the fun stuff, and leave out anything and everything about my illness. But that would have been fake as it is such a big part of my life. Whether I like it or not. So I made the decision to include it. Every raw detail of every step of my life. And I’m so glad that I did because the feedback I got blew me away.

A lot of people asked me how we travel so much and go out so much while dealing with an illness too. And I just never made it an option in my life. I never gave myself the choice to sit back and let life slip away. I took it as it was. I wanted to live my life as normal as possible and I’m sure I can say that I almost succeed.

I got asked how we take a wheelchair everywhere we go as a lot of people are under the impression that when you make use of a wheelchair that your world becomes smaller. And I want to prove them wrong.

I want to show that you can go almost anywhere and still do almost everything that healthy people do.

I also want to blog to raise awareness. To show the censored side of what your own body can do to you. To show and enlighten people about what treatment does to you.

I want to blog to give hope to those who no longer have hope. To show that you can travel, eat, go out and have a good time with friends while battling for your life too, and still smile.

Positivity is a choice.

I haven’t been blogging very long, but I hope that I have the opportunity to do so for many years to come. I wouldn’t have had come this far in life without my hubby who supports me during every second of it all.

Thank you to every single person who read my blog. Thank you to those of you who send me inbox messages on social media telling me that I inspire you. You guys make all of this worth it! ♥

Dear Depression

Dear Depression

What better day to write to you than World Mental Health Day.

I don’t think I remember the first time you paid me a visit. As I never really thought that it was a big deal. I always thought that I will be able to deal with it. Little did I know that it can and will be life-changing.

I do remember when you paid me a visit at the end of 2015 and almost the whole of 2016. Like a dark coloured dust cloud, you blew into my life and covered everything I thought to be beautiful, that had meaning to me, in a black dust. Nothing was beautiful anymore. I struggled to see past the blackness of it all. You made me feel worthless. Like I was somehow a waste of space on this earth. You made me believe that everyone around me felt the same about me too. Like nothing I will ever do will be good enough. I hated myself. I shut myself off from everyone that cared for and loves me. Scared, because I didn’t know what to say or how to act normal. I didn’t want them to perceive me as broken. Or well, more broken than what I already was. I felt tired to pretend to be okay. When clearly you took everything from me and made it black. Dark. Useless.

I wanted to scream. And I wanted to give up on so many occasions. I missed the old me. The happy me…

Although it feels like all I’m doing some days and weeks even, is to keep my head above water. Not to drown. Almost like I’m barely surviving. I still have days where I want to curl up in bed and just cry.

I can hear you knocking, pushing and kicking at the door. Trying to make your dark dust my home again. And every single day, I will push back. I will fight you! I’m scared that I might not be strong enough one day and that you will win. I’m so scared that on some days I struggle to have a normal day.

But listen here depression, as 2017 almost comes to an end, I am still standing here. I am not worthless like you made me out to be. I am a warrior. And I will fight with everything I have in me to never fall into your dark dust cloud again. I am determined to lose you forever.

Depression and anxiety doesn’t make me weak! Far from it actually. I’m stronger because of you!

I have very amazing people in my life, and you will never make me doubt that again.

I very well know how this could have turned out if I have let you win. You could have made me give up on life. And I almost did. But I will keep on fighting you.

And for now, I’m winning!

So please fuck off. 

From the person, you thought you had power over.

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This Body Holding Me

This is not an easy post to write… If you know me, you’ll know that my illness is not something I talk about openly unless you ask me. I don’t really know why. Maybe I feel vulnerable. Maybe it is because I hate pity. Or maybe it’s because I know not a lot of people wants a sick friend, which is fine. And I also think I still have trouble just accepting. It is not easy to have this overwhelming feeling of your own body betraying you.

It all started when I was about 14 or 15. I remember coming home from hockey practice and I could not stay awake. I was so tired. I slept from 3:30 the afternoon till the next morning. And I would still feel tired. Then the vomiting started. I could not keep anything down. My mom took me to the doctor and he diagnosed me with yellow fever. The first of many misdiagnoses. The vomiting continued. And I remember my mom stressing that this could not be right. I was vomiting up to 7 or 8 times a day. And the medication the doctor gave me, did nothing.

I was told to go see a specialist for some test. “Some” being an understatement. They concluded that my CPK level was 26500. More tests followed. I remember one of the tests included big needles being stuck into my legs straight to the muscle and nerves system to see if they are affected too and how much. A lot of operations followed too. The point being they could never find the cause.

They started treating me for Dermatomyositis (a skin and muscle disease). The first treatment was Cortizone. In pill form, in drip form, in any form possible. I went from weighing 55kg to weighing 90kg in just 3 months. I don’t even think there is enough writing space here to even begin to describe what that did to my body. I was in the hospital every month for almost a year. All the treatments and medication made my immune system weak, so I couldn’t fight off any bacteria or infections.

The worst I can remember was being in the hospital and they could not find any veins to give me a drip. They poked me 9 times. In this very same hospital stay, they did blood tests and somehow my lungs were not functioning like they should. Meaning my body and brain weren’t getting enough oxygen. I wasn’t really conscious for the most part, but I remember seeing my mom cry and a flood of nurses taking my bed somewhere. I woke up in ICU, with machines helping me breathe. People weren’t allowed to bring any germs near me so everyone had to wear those hospital masks.

By this stage in my illness, I don’t even remember all the medication I have been on or how many operations and test I have had.  But through this all, my CPK did not change much.

By the time I turned 18, they recommended I start receiving Chemo. This was not a joke anymore. And I remember feeling like, if I want to live, I have to do this. Chemo is not for the faint at heart. This is something I will never wish upon anyone. Not even my worst enemy. No one deserves this.

How do I even begin to explain what it feels like? I don’t think there is a way. I remember crying and throwing up a lot. I remember the smell of anything making me sick. The smell of someone’s perfume, the smell of food, the smell of ANYTHING. Even sounds were too much for me. People laughing or just chatting, people whispering, the sound of cars on the freeway, the sound of the tv. I was on chemo for 2 and a half years, when they told me that it too, like everything else, is not working. They wanted me to get a bone marrow transplant. They sent me home and told me to think about it. This right here, was where I gave up. I wanted nothing more. And I refused to go back.

I was stagnant like that for about 3 years of my life. I had my good days and my bad days.

I was convinced to go see some of the world’s best specialists. As everyone around me has not given up hope like I did. They were fighting to keep hope.

I went to see a specialist from Washington, DC. He was here in South Africa for a week, and he sometimes sees people too. He too, like 8 or 9 before him, told me that I will die because of this illness. I might have a long life, or this illness might take over and progress really fast and I might die soon.

Yet again, I gave up. I was done, and I refused to see any doctor or specialist again in my life.

Until one day, a few years later, my boyfriend then (he is my husband now) and a few family members, convinced me to just go see this one last specialist and they will never bother me about it again.

She did some hardcore tests. And found that I have certain bacteria in my system. Most people are immune to those bacteria, but I wasn’t. What happens is, my body picked up this bacteria somewhere, (possibly a tick) and if I was diagnosed sooner, I would have been healthy by now. Doctors these days treat your symptoms and are not finding the cause of what is wrong. But because it went untreated for almost 9 years, the bacteria took over a lot of organs in my body. The bacteria made my muscles its home. Hiding there. So my immune system attacks my muscle group, trying to fight it. This in return, releases a toxin that places a lot of pressure on my liver, giving me an enlarged liver too. She’s been treating me for a while now and my CPK is the lowest it has been my entire life, 4295. Normal being between 10 to 120.

This disease has brought me to my knees. There are so many nights where I wished to die and prayed that this pain will be over. But Life has different plans for me. And for now, I feel motivated to face everything the world will send my way. I’m stronger than I thought.

For the people not understanding what your CPK levels means: Creatine Phosphokinase is an enzyme in the body. It is found mainly in the heart, brain, and skeletal muscle. When the total CPK level is very high, it most often means there has been stress or injury to the muscle. Extreme muscle breakdown floods a person’s blood with CPK and additional chemicals and toxins. Some of these are toxic to a person’s kidneys and liver, making the condition life threatening.

If this illness is left untreated, it could cause heart, lung and kidney failure.

And for the people wanting to read more about this disease, wanting to check out my amazing specialist or the Carte Blanche episode she was on, click HERE.

This is basically what I have been through the last 15 years of my life. And to those who really do care, I appreciate you more than you’ll ever know. Sticking to my side and just being there, has kept me going on more days than what I care to mention.

This body, this body holding me
Be my reminder here that I am not alone in…
This body, this body holding me, feeling eternal
All this pain is an illusion – Tool (Parabola Lyrics)

One of my Best Friend’s favourite songs that she played to me.